Family caregiving as a global and lifespan public health issue
Authors: William E Haley, Joanne Elayoubi
Journal: The Lancet Public Health (2023)

The informal and unpaid assistance that family caregivers provide to family members with chronic illnesses or disabilities is a growing component and concern of health care and long-term care. The escalating need for care is a global issue with multiple factors, including more people living to advanced ages, the subsequent increase in the number of people with chronic disabilities, and the increased longevity for people of all ages with chronic disabilities.1United NationsHealth sector challenges and policies in the context of ageing populations.https://www.un.org/development/desa/pd/sites/www.un.org.development.desa.pd/files/files/documents/2021/Nov/technical_paper_healthy_life_expectancy_29nov.2021_0.pdfDate: 2021Date accessed: September 15, 2023Google Scholar The public health sector and people with disabilities are now more than ever reliant on unpaid family caregivers for most home and community-based care. The Article by Rebecca E Lacey and colleagues2Lacey RE Xue B Di Gessa G Lu W McMunn A Mental and physical health changes around transitions into unpaid caregiving in the UK: a longitudinal, propensity score analysis.Lancet Public Health. 2023; (published online Nov 14.)https://doi.org/10.1016/S2468-2667(23)00206-2Summary Full Text Full Text PDF PubMed Scopus (2) Google Scholar makes very important and novel contributions to our understanding of the scope and consequences of family caregiving for the mental and physical health of caregivers. Although there are many studies using convenience samples of caregivers focused on caregiving for specific conditions across the lifespan (such as spinal cord injury, or intellectual disability) most population-based studies of family caregiving have focused on older adult samples. Thus, there has been a major gap in understanding caregiving that is provided by people of all ages and inquiry into age groups most susceptible to risk for negative effects. Many studies have compared mental and physical health of caregivers with non-caregivers, but few have studied the transition to caregiving (eg, measuring wellbeing and health before and after the onset of caregiving). Studying transitions is a powerful method that reduces questions about the extent to which differences in mental and physical health represent changes due to caregiving stress. Lacey and colleagues studied mental and physical health changes before and after the transition to caregiving and included a sample of participants aged 16 years and older. Their findings are consistent with a large body of evidence which shows that caregiving, and the transition to caregiving, leads to substantial increases in psychological distress. Of particular importance is the novel finding that caregivers younger than age 50 years showed the greatest increases in distress after a transition to caregiving. This relatively higher impact with younger age is consistent with a previously published study on transitions to caregiving which found that caregivers in the oldest age group (averaging age 80 years) showed smaller increases in depressive symptoms after a transition to substantial and sustained caregiving than did the youngest group (averaging age 64 years).3Haley WE Roth DL Sheehan OC et al.Effects of transitions to family caregiving on well-being: a longitudinal population-based study.J Am Geriatr Soc. 2020; 68: 2839-2846Crossref PubMed Scopus (25) Google Scholar As Lacey and colleagues mention, caregiving is less normative in younger people and has the potential to interfere with other social roles, such as partnerships, parenting, education, and employment. Another unique contribution of the study is the finding that this psychological distress continued for several years after the onset of caregiving. The study replicated widely found effects that those providing more hours of care and co-residing with the care recipient showed greater increases in distress across age groups.4Schulz R Eden J Families caring for an aging America. National Academies Press, Washington, DC2016Crossref Google Scholar The relative lack of evidence in the study by Lacey and colleagues2Lacey RE Xue B Di Gessa G Lu W McMunn A Mental and physical health changes around transitions into unpaid caregiving in the UK: a longitudinal, propensity score analysis.Lancet Public Health. 2023; (published online Nov 14.)https://doi.org/10.1016/S2468-2667(23)00206-2Summary Full Text Full Text PDF PubMed Scopus (2) Google Scholar suggesting declines in physical health in the aftermath of caregiving is noteworthy. Early studies of caregivers reported that caregiving strain was related to higher mortality, increased inflammation, and declining immune functioning.5Roth DL Sheehan OC Haley WE Jenny NS Cushman M Walston JD Is family caregiving associated with inflammation or compromised immunity? A meta-analysis.Gerontologist. 2019; 59: e521-e534PubMed Google Scholar, 6Roth DL Brown SL Rhodes JD Haley WE Reduced mortality rates among caregivers: does family caregiving provide a stress-buffering effect?.Psych & Aging. 2018; 33: 619Crossref PubMed Scopus (65) Google Scholar More recent studies, including several meta-analyses, have reported that caregivers show 16% reduced mortality compared with matched non-caregivers7Mehri N Kinney J Brown S Rajabi Rostami M Informal caregiving and all-cause mortality: a meta-analysis of longitudinal population-based studies.J Applied Gerontology. 2021; 40: 781-791Crossref PubMed Scopus (24) Google Scholar and do not show clinically significant increases in inflammation compared with matched non-caregivers.5Roth DL Sheehan OC Haley WE Jenny NS Cushman M Walston JD Is family caregiving associated with inflammation or compromised immunity? A meta-analysis.Gerontologist. 2019; 59: e521-e534PubMed Google Scholar, 8Roth DL Haley WE Sheehan OC et al.The transition to family caregiving and its effect on biomarkers of inflammation.PNAS. 2020; 117: 16258-16263Crossref PubMed Scopus (19) Google Scholar Caregiving is a unique type of stressor that is often accompanied by reports of psychological benefits and has been found to be associated with resilience to the negative effects of depression and perceived stress on mortality.6Roth DL Brown SL Rhodes JD Haley WE Reduced mortality rates among caregivers: does family caregiving provide a stress-buffering effect?.Psych & Aging. 2018; 33: 619Crossref PubMed Scopus (65) Google Scholar The authors also highlight the importance of including attention to identification and supporting caregiving in health care, with primary care and hospital discharge as key providers, and documentation of caregiving in their own medical charts. Others have emphasised the need for focusing on person-centred and family-centred care across all health-care settings, including involvement in shared decision making, care coordination, transitional care, emergency care, and home safety.4Schulz R Eden J Families caring for an aging America. National Academies Press, Washington, DC2016Crossref Google Scholar Beyond health care, the needs of caregivers should be addressed in diverse realms including employment, provision of paid leave for caregivers (which is unavailable in most countries),9Heymann J Raub A Waisath W Earle A Stek P Sprague A Paid leave to meet the health needs of aging family members in 193 countries.J Aging Soc Pol. 2022; (published online Aug 25.)https://doi.org/10.1080/08959420.2022.2110804Crossref PubMed Scopus (3) Google Scholar and coverage of long-term care services in health-care programmes such as Medicare. Recognising that the challenges of an ageing population are relevant not only to the mental and physical health of older adults, but also to individuals who are caregivers across the lifespan, will be essential in advancing global health. Because women are far more likely to become caregivers, addressing caregiver mental and physical health is also a gender equity issue,10Stall NM Shah NR Bhushan D Unpaid family caregiving—the next frontier of gender equity in a postpandemic future.JAMA Health Forum. 2023; 4e231310Crossref PubMed Scopus (3) Google Scholar with women at higher risk of negative health outcomes and related effects such as reduced employment, lower income, and diminished retirement income, without support for working caregivers. We declare no competing interests. WEH and JE contributed equally. Mental and physical health changes around transitions into unpaid caregiving in the UK: a longitudinal, propensity score analysisOur findings highlight the importance of early identification of and support for caregivers, including younger caregivers. This is important to break the cycle of caregiving and future care need. Health services staff, including general practitioners and hospital discharge teams, are well positioned for early identification of caregivers. We also encourage particular support for the mental health of caregivers and particularly those who become caregivers at a younger age. Full-Text PDF Open Access